pyoderma gangrenosum

removing necrotic tissue without surgery/debridement
1
pyoderma gangrenosum sufferers - 33.3%
2
pyoderma gangrenosum treatment - 66.7%

 
New Topic Post Reply Printable Version
31 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

steggy
New Member


Date Joined Aug 2010
Total Posts : 7
   Posted 8/3/2010 12:12 AM (GMT -7)   
hi all pg victims ( i say that cause my poor husband is a victim)
my husband has been diagnosed with pyoderma gangrenosum last october.....he does not suffer from any other ailments...his was caused by trauma, due to a cut recieved to his calf.
The wound has now extended to 18cm by 21 cm , bone is showing and the remaining surface is covered in necrotic tissue....
surgery is NOT a option here for  removing the necrotic tissue as this is classed as trauma ( more trauma/bigger the wound). ampitation is the last resort as there is no guarantee he wouldn't get it in the stump, as this is classed as trauma.
he like all you other sufferers is on oral steroids/ antibiotics/ and any other medication deemed to help) he even has a drip every 8 weeks of a drug called infliximab( to which he has to get funding for). this treatment has slowed the process down but it does not remove the necrotic tissue, we have tried everything from gels to dressings to remove this and surgical debridmentis not a option as again this is trauma. until this is removed the wound will not stand a chance at healing. any suggestions i can mention to his doctor.
he is on morphine tablets and has to top this up with oramorph when the pain is to much to take
please please post any suggestions or ideas . 
my husbands case is very rare so all you pg sufferers out there DO NOT PANIC this thing can be healed( we met someone) ...we just have the problem of necrotic tissue. 

Post Edited (steggy) : 8/3/2010 1:33:30 AM (GMT-6)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/3/2010 8:21 AM (GMT -7)   
One of our moderators Lyn Howlyncat suffers with PG too. Hopefully my bumping up your post will bring it to her attention and she can talk to you more about it. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 8/5/2010 5:27 AM (GMT -7)   
Hi and welcome
My PG is directly corrulated to my crohns 1 to 2 percent with cd will get pg at some time or other
i hv done extensive research on this malady n i hope to be able to help more drs understand
i would be on antibiotics iv sometimes for 2 3 mths at a time
the whole issue behind pg is the immune system or lack there of to properly heal ..from what i hv learnt thru the yrs from renowned dermys
stress always made my sores worse n they were deep..some to the bones
i have scars like you would not believe
PG does not appear on trunk of body but everywhere else...
there was pics on here ill hv a look n see if i can find them or some of my others

I have never felt pain as the pain from these sores they would literally grow right before my eyes
i now am deaf from the iv meds used for the pg
i am on a waiting list for cochlear implants to get hearing back
in the interrim i am losing my site as wel
i can only suggesst what i hv been told n that is NOT to cover the sores up
pred can help but your / his body needs to hv a healthier immune system
I TRULY AM SORRY YR HUBBY SUFFERS WITH THIS TOO
plz know i apologise for not answering more promptly but i hv been going thru some issues myself ..
i hv much more on this if you hv questions n will be around to answer
my email is there too
i feel ppl need to know more of this dd as it is starting to become more prevalent
blessings

lyn
                 Co Mod for... CROHNS..ANXIETY/ PANIC.....ALZHEIMERS
        DX.. a/p ....crohns ...fibro... pyoderma gangrenosum..seizures....deaf
            meds..lyrica..pentasa...valproic acid..ativan...diazepam....t 3 s prn
                  Help HEALING WELL...DONATE...www.HealingWell.com
                        WE CAN N WILL GET THRU THIS TOGETHER
                                                   LYN                       

steggy
New Member


Date Joined Aug 2010
Total Posts : 7
   Posted 8/6/2010 10:46 PM (GMT -7)   
hi lyn
thanks for your reply.
my husbands immume system has been wiped out to try and heal this thing, his dr says that if he had his immune system the pg would grow more.
as for leaving the wound open, i dont think that is possible, he is on compression bandages and has been since the first week. he finds it even more painful when they remove the dressings.
so you are telling me that you leave your wounds open with no dressings, and you have a healthy immune system( is that coz of the crohns)?
makes me wonder if this is what the problem is then him not having any.
is there anyone else out there that still has their immune system with pg?
janet
xxx
 

steggy
New Member


Date Joined Aug 2010
Total Posts : 7
   Posted 8/6/2010 10:55 PM (GMT -7)   
sorry lyn
im so wrapped up in my own hubbies misery that i forgot to mention how sorry i am that you are unfortunate to suffer with this horrible condition also.
i know the pain you go through with these dreaded sores as i have to watch my may i say quite hard husband reduce to a wimp when it is at its worst.
maybe they should list pyoderma on the diseases list as there are a lot of sufferers out there (we were led to believe that there are only 1 in 100,000 people that suffer with it).

Squattie
Veteran Member


Date Joined Jul 2005
Total Posts : 669
   Posted 8/7/2010 11:31 AM (GMT -7)   
Hey there,

So sorry for your husband. If you are running out of options, google healing wounds with sugar.

I recently read some pretty fascinating things about how sugar will heal open wounds when other options are failing. Apparently some doctors and a lot of animal vets know about this.
.....Squattie

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 8/8/2010 7:08 AM (GMT -7)   
hi there
i was told that my immune system was really messed up after hysterectomy
i was also dx with cd then

the sores i had were large and weeping continually ..pus or blood
when they took swab or did a biopsy nothing grew.hmmm but my sores sure did
we hv a university hospital here and i swear i had more student docs check me out daily but i idnt mind at least i knew they were trying to learn n they asked me all kinds of questions
my biggest thing was after hysterectomy i did not heal properly
from there when i got sores they were oon fingers n arms
then went to legs
it was horrid
i was also put on mtx for long time
the reasoning the dermy gv to lv them open was to let thm hv air
many times i went and did wrap them it was horrible to look at for myself n sure others
i hope yr hubby is oing better
again my sores gt worse when under stress
blessings
lyn
CO MOD FOR CROHNS..A/P...ALZHEIMERS

DX..PYODERMA GANGRENOSUM/ CROHNS..FIBRO

SEIZURES,,NEUROPATHY..DEAF
MEDS..LYRICA..VALPROIC ACID..DIAZEPAM..ATIVAN
DILANTIN..PENTASA
LYN

OriginalAreU2
Regular Member


Date Joined May 2007
Total Posts : 89
   Posted 8/8/2010 10:15 AM (GMT -7)   
sorry to hear you& your husband are dealing with PG
 
I have had it for the last 5 years.  I have yet to find a pain killer to touch the pain.  Morphine in an IV did nothing. Oxy  did nothing.  At this point I take nothing.
 
My treatements been the total opposite of Lyns,  I have been told since day one to keep the wound covered and never open. I was told a scab would be the worst thing, since you would have to remove it and that would cause more aggrivation to the wound.
 
I have had the wound vac,  and many forms of dressings.  Currently I am on poly-mem, and then I wrap kerlex around it to keep it attached.
 
If I can help or answer any questions please let me know. 
Hugs.
Diagnosed 4 years ago. been  a helluva ride since.  If there is a side issue to this dd I can find it.  I suffer with Pyoderma Gangrosum and horriffic mouth ulcers that get to the point I can't open my jaws.  Last one was nice enough to create a fistula and  add to my list of fun things to deal with.
Been on all kinds a things, currently on Imuran 150 mgs and it at least give me some confidence in leaving my home.
Allergic to Remicade. Promethius test shows my body fights it.  Also suspected to have PBC or PSC  autoimmune liver disease.
 

steggy
New Member


Date Joined Aug 2010
Total Posts : 7
   Posted 8/8/2010 9:20 PM (GMT -7)   
hi all
thanks for the information shared....ive been all weekend checking out menuka honey....it sounds as if this thing could really work at removing the necrotic tissue and possibly do the wound good..I am going to mention it to his doc later, its only honey... so what harm can it do we have tried everything else at healing this crater. As for the pain we had a consultant phone him the other day asking could he go and see him there and then which was virtually impossible as he was in so much pain he couldnt even speak... the consultant was understanding and has offered to meet him today while at his normal hospital for dressing change/ consultation. The one thing that has helped me personally is that we are not alone with this ..its not nice for you sufferers out there but its nice for me to know we have people we can talk to that are going through this thing also. I watch my quite hard husband reduced to a quivering wimp when he gets a bad bout of pain...his everyday pain he recieves he can cope with, but these bad bouts are unbelievable and i feel helpless coz i cant do anything for him.
please keep your reply's coming
any information is helping.
and its nice to talk to someone.
janet
if i could wave my magic wand for you all.. believe me i would.

steggy
New Member


Date Joined Aug 2010
Total Posts : 7
   Posted 8/8/2010 9:29 PM (GMT -7)   
as for V A C (Vaccum Assisted Closure) theropy my husband had that 4 years ago on the same wound to which hed just had a 2nd skin graft and it was amazing sucked all the gook out (sorry) and promoted good blood supply to the wound it even shrank the wound down to be able to do the skin graft., this time they wont even do a skin graft as now hes been told he has pg and his is caused by trauma they wont even entertain doing another one. i have mentioned the VAC again this time but we are told that it wouldnt be helpful .

OriginalAreU2
Regular Member


Date Joined May 2007
Total Posts : 89
   Posted 8/9/2010 11:39 AM (GMT -7)   
I was just going to say, they told me with having PG, a skin graft was out of the question.
Mines also on my calf, and after 3 years they have said they dont think it will ever close.
Keep us posted on things there.
Hugs.
Diagnosed 4 years ago. been  a helluva ride since.  If there is a side issue to this dd I can find it.  I suffer with Pyoderma Gangrosum and horriffic mouth ulcers that get to the point I can't open my jaws.  Last one was nice enough to create a fistula and  add to my list of fun things to deal with.
Been on all kinds a things, currently on Imuran 150 mgs and it at least give me some confidence in leaving my home.
Allergic to Remicade. Promethius test shows my body fights it.  Also suspected to have PBC or PSC  autoimmune liver disease.
 

janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 8/11/2010 7:35 PM (GMT -7)   
I had a lot of pain until last week, when I switched to Hydrofera which is a foam permeated with gentian violet and methyl blue on my PG. Within about 4 days the pain extraordinary pain was gone.


If you look at the hydrofera website you'll see a study done on some pretty grim pyoderma cases with great success.

this has been a godsend for me. It's also healing up. You don't need a script for it, if you want to try it yourself, look at ebay I got some about half price there. You can cut it to fit, dampen it, put a waterproof dressing on it, and thatzzit.

I can't use most adhesives, so I just rewet it every 4 hours or so. It's worth it to be off pain pills. It's a very forgiving dressing as long as you keep it damp.

One thing I;ve learned the very hard way about PG was in my case, it needs a moist healing environment. Check it out!

OriginalAreU2
Regular Member


Date Joined May 2007
Total Posts : 89
   Posted 8/12/2010 9:49 AM (GMT -7)   
I used the hydroffera blue in the past, it didnt do anything for my pain, and kept my wound too moist, so I had to switch to something else. I was told you have to use sterile water with it.
Glad you are having good results!!
Diagnosed 4 years ago. been  a helluva ride since.  If there is a side issue to this dd I can find it.  I suffer with Pyoderma Gangrosum and horriffic mouth ulcers that get to the point I can't open my jaws.  Last one was nice enough to create a fistula and  add to my list of fun things to deal with.
Been on all kinds a things, currently on Imuran 150 mgs and it at least give me some confidence in leaving my home.
Allergic to Remicade. Promethius test shows my body fights it.  Also suspected to have PBC or PSC  autoimmune liver disease.
 

janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 8/12/2010 8:01 PM (GMT -7)   
well, I'm having a lot of trouble maintaining moisture levels, I can't wear any of the tegaderm type stuff, I'm now allergic to about every adhesive LOL!
it's on my back/shoulder blade so I can't wrap it, so my problem is it's drying out, even though I rewet it 4x a day, my problem is it's getting dry too fast... so it's not all beer and skittles here either BUT all I have left before I put my head in the oven. And it has relieved the pain, but every day is a total challenge keeping the moisture right. Too dry is bad too. hugs! I was freaking amazed at the pain level decrease though. such a challenge all this is, eh?

btw: I just went backwards a year of healing b/c of a rebound reaction from a poor reaction to protopic and quitting protopic, that was a little depressing. But in the meantime I found a case study of a combination of SSD plus topical steriods and I tried that and it helped a lot, but the pain was really getting to me, so I decided to try the hydrofera for awhile. if you want the study, just message me. I may alternate the ssd+clobetesol and the hydrofera for the next month or so... i'll keep in touch if you want, I left last year after the PG thread got shut down and just decided to drop back... I could not get the lesion to heal at all till i started LDN.

Post Edited (janicea) : 8/12/2010 9:06:08 PM (GMT-6)


steggy
New Member


Date Joined Aug 2010
Total Posts : 7
   Posted 8/19/2010 9:37 PM (GMT -7)   
hi all
well yesterday my husband had his iv of infliximab, it will take about 7 days before we start seeing a improvement, i also applied menuka honey on part of the wound to see if it had any affects on him like stinging etc....he says he hasnt so next dressing i will apply more.
the grand round ( lots of doctors looking at it and coming up with something) was in some ways helpful they have decided to up his dose of infliximab and its frequency..just awaiting funding again.
as for the pain hes still in agony.
janicea he is also allergic to the adhesive on the dressings so he uses a dressing called mepilex and mepitel. they dont irrated him at all and keep all the moisture in give them a go as they are large adhesive pads and you wont require wrapping as they stick. he also uses a gel called aquaform. its a tropical gel
will keep you informed about the honey

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 8/25/2010 3:52 PM (GMT -7)   
Hi
just wondering how hubby is doing
i feel it has to be breaking your heart to see him in this agony
plz let us know how he and you are doing
gentle hugs
i wish he didnt have to suffer and i feel so so bad for him knowing the pain that pg comes with
Co MODERATOR for Crohns...A./ P...Alzheimers

SEIZURES,,NEUROPATHY..DEAF
MEDS..LYRICA..VALPROIC ACID..DIAZEPAM..ATIVAN
DILANTIN..PENTASA
LYN

steggy
New Member


Date Joined Aug 2010
Total Posts : 7
   Posted 8/26/2010 12:39 AM (GMT -7)   
hi again
thanks for your concern, its just nice to have someone to talk to. 
i must say its also nice to know people are reading these forums and helpng each other get through tough times.
dressing change later  today 1 week after infliximab will let you know how hes getting on . the honey takes the offensive smell away i suppose thats a bonus to my hubby, sometimes he gets embarrassed with the odour especially if we have company.
walking is getting more difficult now , will need a support calaper when hes healed to aid the drop foot caused by this.
will keep you informed
janet
 

Dreamstgirl
New Member


Date Joined Aug 2010
Total Posts : 1
   Posted 8/26/2010 2:43 PM (GMT -7)   
I got pg in 2008 almost amputated my toe, I received CIMZIA injections it really works been on them 23 months.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/26/2010 3:03 PM (GMT -7)   
Hey Dreamstgirl,

I just wanted to welcome you to Healingwell. Glad to hear the Cimzia is working so well for your pg.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 8/31/2010 4:55 PM (GMT -7)   
hey OriginalAreU, I may be filling into the too moist category. Which sux b/c it totally undid my pain. I just had to switch off of it. If you get a chance, can you tell me if it was slow healing that made them think it was too damp?? I'm still trying to decide what to do...
thanks.
strictures, crohn's, adhesions, endo. Pyoderma Gangrenosum.
LDN 4.5mg caused 100% crohn's remission.

OriginalAreU2
Regular Member


Date Joined May 2007
Total Posts : 89
   Posted 8/31/2010 6:19 PM (GMT -7)   
My wound seems to be more moist, with the more I am up on that leg or use it more.  Like if I drive or use steps, etc.    The hydrofera worked for a few months for me then we went to Polymem Foam Pads.    My wound will be smaller at one appt, then jump back up at the next.  There seems to be no rhyme or reason.  Next Friday will be 3 years, and they dont seem to have any pretend hope that it will ever fully close.
I had another PG wound at one point on my foot, it has closed. but still re opens and thats been closed for 2 years. 
Its a frustrating disease and since its not well known about, the ways of treating it seem varied, since what works for one person, doesnt work for another.
 
Hugs to you & all those dealing with the wounds and the pain.

janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 9/1/2010 7:51 AM (GMT -7)   
What do you use with the Polymem? Are you using the silver ones? ((HUGS))
strictures, crohn's, adhesions, endo. Pyoderma Gangrenosum.
LDN 4.5mg caused 100% crohn's remission.

OriginalAreU2
Regular Member


Date Joined May 2007
Total Posts : 89
   Posted 9/1/2010 8:32 AM (GMT -7)   
polymem non adhesive pad...we are trying something new the last few months by applying some hydrocortizone cream to the pad. After thats on, I wrap a kerlix around it to keep it in place. I dont do well with any adhesives, my skin is too thin and weak around the wound area.

No pain with removal which is a relief!
Diagnosed 4 years ago. been  a helluva ride since.  If there is a side issue to this dd I can find it.  I suffer with Pyoderma Gangrosum and horriffic mouth ulcers that get to the point I can't open my jaws.  Last one was nice enough to create a fistula and  add to my list of fun things to deal with.
Been on all kinds a things, currently on Imuran 150 mgs and it at least give me some confidence in leaving my home.
Allergic to Remicade. Promethius test shows my body fights it.  Also suspected to have PBC or PSC  autoimmune liver disease.
 

janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 9/5/2010 2:23 PM (GMT -7)   
which cortisone are they using? I'm on clobetesol and it's causing me severe rebound every time i try to get off it, so I'm starting pulse dose (4x a week) but I'd love to try something different, and you know I'm sure all the other issues with putting it on bandages. I'm looking to try something less potent and would love to know what you're using!!! i bumped mine today, so depressing. thank god i had on the hydrofera so there was at least some foam between me and the whump.
strictures, crohn's, adhesions, endo. Pyoderma Gangrenosum.
LDN 4.5mg caused 100% crohn's remission.

19D43
New Member


Date Joined Jul 2011
Total Posts : 4
   Posted 7/25/2011 7:56 PM (GMT -7)   
OriginalAreU said...
I was just going to say, they told me with having PG, a skin graft was out of the question.
Mines also on my calf, and after 3 years they have said they dont think it will ever close.
Keep us posted on things there.
Hugs.

Don't know why your Doc's have told you a skin graft was out of the question. I had a graft on my lower leg last September involving about 55% of my calf and it took just great. Have been having some minor lesions (two so far) but they aren't doing too bad. Hope you can have them "revisit" the graft issue and give it some serious thought. I had mine done at Vanderbilt University Medical Center in Nashville, TN
New Topic Post Reply Printable Version
31 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Thursday, December 08, 2016 9:02 PM (GMT -7)
There are a total of 2,735,150 posts in 301,279 threads.
View Active Threads


Who's Online
This forum has 151376 registered members. Please welcome our newest member, ufindjess.
302 Guest(s), 9 Registered Member(s) are currently online.  Details
VernonDemerest, Butterflake, THE HAPPY TURTLE, 1000Daisies, LG13, dbwilco, sam12, Sarakt, wayland


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer